Commentary Law and Policy

Ukrainian Patients Call For Changes in Restrictive Opiate Substitution Treatment Policies

Viktoria Lintsova

To be at the International AIDS Conference in Washington, DC would mean a lot to me. I would’ve wanted to share our issues with the delegates and I’m sorry that the US immigration policy restricts entry into the country for people like me.

Cross-posted in partnership from the HIV Human Rights blog and part of Rewire’s coverage of the International AIDS Conference, 2012.

I am 36 years old and, like millions of other women in Ukraine, I have a family—a husband and two daughters. I have my hobbies and a job that I love, a job that lets me fulfill my potential and be an active citizen. My hope is that my activism will help to advance the rights of drug users in Ukraine and improve the quality of their lives.

To be at the International AIDS Conference in Washington, DC would mean a lot to me. I would’ve wanted to share our issues with the delegates and I’m sorry that the US immigration policy restricts entry into the country for people like me. It’s a shame that my drug dependency has to stand in the way of opportunities available to me in life. I’d like to believe that this will not always be the case.

My country, Ukraine, is a facing an HIV epidemic that is concentrated among its most vulnerable groups. This is a huge problem, the solution to which, in my opinion, depends on the political will of our government as well as on the engagement of those most affected by the epidemic. I’ve been living with HIV for the last 12 years. I know that in order to stay alive and healthy, I need to take care of myself. My life and my health are my responsibility. Overcoming the HIV epidemic in my country is our joint responsibility. The more personal our engagement, the more effective our response will be. Perhaps, even my voice by itself can make a difference.

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Using drugs used to be the biggest problem in my life. I managed to overcome it because I had access to opiate substitution treatment (OST). I’ve been a buprenorphine patient for the last four years and have been able to live a normal life, raise my kids, and do the work I love. There is no longer a need to run around looking for money and drugs. Every day I see the way OST is making a positive difference in the lives of others. I see women who have children and who’ve come to seek treatment in hopes of getting their lives back. A mother devotes all of her time and energy to her children. A mother who uses drugs is often torn between her children and her drug use—such is the harsh reality of our medical condition. This is why many women, like me, were already HIV-positive by the time they began OST treatment. They simply didn’t have the energy, the time, or the means to take care of their health when they were using drugs.

OST has given us new opportunities to live a fulfilling life and experience the joy of motherhood, and we are grateful to those who pushed hard for its introduction in Ukraine. However, as patients, we face extremely challenging treatment conditions, and we think it’s time for a change.

Every day I spend more than two hours to get to the OST clinic for my medication. In Ukraine’s larger cities this can take up to four hours. That’s 730 hours a year. I would love to spend these 730 hours on something else: my children, the job I love, my health. Yet the medical system in Ukraine is quite rigid and doesn’t allow for OST take-homes or prescriptions. The bureaucracy and my status as a drug-dependent person leave me no opportunity to change the situation in the region where I live.

I have a dream—to spend a vacation with my kids by the sea. However, my medication, buprenorphine, is only available in a few regions throughout Ukraine, and none of them are near the sea.

In addition, as OST patients, we are constantly at risk of having our diagnosis disclosed against our will. The confidentiality laws in Ukraine are poorly enforced, and the medical personnel often gets away with breaching the law. As a consequence, people with similar diagnoses to mine are frequently subjected to degrading treatment. Then there is the privacy of our children. We worry for them. If their teachers or the other parents find out that the child’s parents are HIV-positive or use drugs, he or she will face serious problems. And let’s not forget about the police. They think my medical condition is a criminal offense. I often see OST patients getting detained outside the clinics, being pressured and manipulated as they go into withdrawal while in detention.

The latest changes to Ukrainian OST regulations complicate our lives even further. From now on, anyone of us can be kicked out of the program for relapsing (using illicit drugs or alcohol), missing a visit to the clinic for any reason, or being charged with an administrative offense (even jaywalking or smoking in a non-smoking area). If I get sick and am admitted to the hospital, I will suffer in withdrawal for the first few days while my doctors go through the bureaucratic formalities of transferring my medication to me in the hospital. If I lose my job, I won’t be able to go away to a different city without also losing my spot at the clinic. Now, every time I go out of town, I’ll have to show a vacation slip or a travel authorization form from my employer to my doctor. And if anyone at work finds out that I am an OST patient and have a history of drug use—I can lose my job…

With these changes, fear has become a permanent part of my life. I am even scared to be a mother again. Because of my fragile health and my ties to the OST clinic, I worry that my experience of motherhood will turn out to be desperately miserable. I am not the only one faced with difficult choices. People who use illicit drugs now have two options: to continue their life as outlaws, or to seek treatment and embrace OST the way it’s currently set up in Ukraine. The effects of these new changes to the OST program will be significant: the number of OST patients is likely to decrease, which will inevitably lead to an increase in HIV incidence and mortality among injecting drug users as drug users switch back to heroin and sharing syringes. The goals that the government and the community have set out for themselves won’t come close to becoming a reality under such conditions.

In short, the rules need to change if the government is to reach its goal—to decrease HIV rates among injecting drug users, and if we are to reach ours—to ensure a life, where our health and our rights are protected. I want my voice to be heard and considered. OST patients—people like me, who are dependent on drugs and often have a host of other health problems—also want a future and a normal life. We want to have the same opportunities to work and travel around and outside of the country as anybody else, and we want those rights protected. We want the right to live free of fear, with dignity and hope for a better future. We want to be part of the solution to the HIV epidemic in our country. And we want to help shape a society where everyone is entitled to equal rights, irrespective of their medical condition.

Commentary Contraception

Hillary Clinton Played a Critical Role in Making Emergency Contraception More Accessible

Susan Wood

Today, women are able to access emergency contraception, a safe, second-chance option for preventing unintended pregnancy in a timely manner without a prescription. Clinton helped make this happen, and I can tell the story from having watched it unfold.

In the midst of election-year talk and debates about political controversies, we often forget examples of candidates’ past leadership. But we must not overlook the ways in which Hillary Clinton demonstrated her commitment to women’s health before she became the Democratic presidential nominee. In early 2008, I wrote the following article for Rewirewhich has been lightly edited—from my perspective as a former official at the U.S. Food and Drug Administration (FDA) about the critical role that Clinton, then a senator, had played in making the emergency contraception method Plan B available over the counter. She demanded that reproductive health benefits and the best available science drive decisions at the FDA, not politics. She challenged the Bush administration and pushed the Democratic-controlled Senate to protect the FDA’s decision making from political interference in order to help women get access to EC.

Since that time, Plan B and other emergency contraception pills have become fully over the counter with no age or ID requirements. Despite all the controversy, women at risk of unintended pregnancy finally can get timely access to another method of contraception if they need it—such as in cases of condom failure or sexual assault. By 2010, according to National Center for Health Statistics data, 11 percent of all sexually experienced women ages 15 to 44 had ever used EC, compared with only 4 percent in 2002. Indeed, nearly one-quarter of all women ages 20 to 24 had used emergency contraception by 2010.

As I stated in 2008, “All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.”

Now, there are new emergency contraceptive pills (Ella) available by prescription, women have access to insurance coverage of contraception without cost-sharing, and there is progress in making some regular contraceptive pills available over the counter, without prescription. Yet extreme calls for defunding Planned Parenthood, the costs and lack of coverage of over-the-counter EC, and refusals by some pharmacies to stock emergency contraception clearly demonstrate that politicization of science and limits to our access to contraception remain a serious problem.

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Today, women are able to access emergency contraception, a safe, second chance option for preventing unintended pregnancy in a timely manner without a prescription. Sen. Hillary Clinton (D-NY) helped make this happen, and I can tell the story from having watched it unfold.

Although stories about reproductive health and politicization of science have made headlines recently, stories of how these problems are solved are less often told. On August 31, 2005 I resigned my position as assistant commissioner for women’s health at the Food and Drug Administration (FDA) because the agency was not allowed to make its decisions based on the science or in the best interests of the public’s health. While my resignation was widely covered by the media, it would have been a hollow gesture were there not leaders in Congress who stepped in and demanded more accountability from the FDA.

I have been working to improve health care for women and families in the United States for nearly 20 years. In 2000, I became the director of women’s health for the FDA. I was rather quietly doing my job when the debate began in 2003 over whether or not emergency contraception should be provided over the counter (OTC). As a scientist, I knew the facts showed that this medication, which can be used after a rape or other emergency situations, prevents an unwanted pregnancy. It does not cause an abortion, but can help prevent the need for one. But it only works if used within 72 hours, and sooner is even better. Since it is completely safe, and many women find it impossible to get a doctor’s appointment within two to three days, making emergency contraception available to women without a prescription was simply the right thing to do. As an FDA employee, I knew it should have been a routine approval within the agency.

Plan B emergency contraception is just like birth control pills—it is not the “abortion pill,” RU-486, and most people in the United States don’t think access to safe and effective contraception is controversial. Sadly, in Congress and in the White House, there are many people who do oppose birth control. And although this may surprise you, this false “controversy” not only has affected emergency contraception, but also caused the recent dramatic increase in the cost of birth control pills on college campuses, and limited family planning services across the country.  The reality is that having more options for contraception helps each of us make our own decisions in planning our families and preventing unwanted pregnancies. This is something we can all agree on.

Meanwhile, inside the walls of the FDA in 2003 and 2004, the Bush administration continued to throw roadblocks at efforts to approve emergency contraception over the counter. When this struggle became public, I was struck by the leadership that Hillary Clinton displayed. She used the tools of a U.S. senator and fought ardently to preserve the FDA’s independent scientific decision-making authority. Many other senators and congressmen agreed, but she was the one who took the lead, saying she simply wanted the FDA to be able to make decisions based on its public health mission and on the medical evidence.

When it became clear that FDA scientists would continue to be overruled for non-scientific reasons, I resigned in protest in late 2005. I was interviewed by news media for months and traveled around the country hoping that many would stand up and demand that FDA do its job properly. But, although it can help, all the media in the world can’t make Congress or a president do the right thing.

Sen. Clinton made the difference. The FDA suddenly announced it would approve emergency contraception for use without a prescription for women ages 18 and older—one day before FDA officials were to face a determined Sen. Clinton and her colleague Sen. Murray (D-WA) at a Senate hearing in 2006. No one was more surprised than I was. All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.

Sometimes these success stories get lost in the “horse-race stories” about political campaigns and the exposes of taxpayer-funded bridges to nowhere, and who said what to whom. This story of emergency contraception at the FDA is just one story of many. Sen. Clinton saw a problem that affected people’s lives. She then stood up to the challenge and worked to solve it.

The challenges we face in health care, our economy, global climate change, and issues of war and peace, need to be tackled with experience, skills and the commitment to using the best available science and evidence to make the best possible policy.  This will benefit us all.

News Health Systems

Complaint: Citing Catholic Rules, Doctor Turns Away Bleeding Woman With Dislodged IUD

Amy Littlefield

“It felt heartbreaking,” said Melanie Jones. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

Melanie Jones arrived for her doctor’s appointment bleeding and in pain. Jones, 28, who lives in the Chicago area, had slipped in her bathroom, and suspected the fall had dislodged her copper intrauterine device (IUD).

Her doctor confirmed the IUD was dislodged and had to be removed. But the doctor said she would be unable to remove the IUD, citing Catholic restrictions followed by Mercy Hospital and Medical Center and providers within its system.

“I think my first feeling was shock,” Jones told Rewire in an interview. “I thought that eventually they were going to recognize that my health was the top priority.”

The doctor left Jones to confer with colleagues, before returning to confirm that her “hands [were] tied,” according to two complaints filed by the ACLU of Illinois. Not only could she not help her, the doctor said, but no one in Jones’ health insurance network could remove the IUD, because all of them followed similar restrictions. Mercy, like many Catholic providers, follows directives issued by the U.S. Conference of Catholic Bishops that restrict access to an array of services, including abortion care, tubal ligations, and contraception.

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Some Catholic providers may get around the rules by purporting to prescribe hormonal contraception for acne or heavy periods, rather than for birth control, but in the case of copper IUDs, there is no such pretext available.

“She told Ms. Jones that that process [of switching networks] would take her a month, and that she should feel fortunate because sometimes switching networks takes up to six months or even a year,” the ACLU of Illinois wrote in a pair of complaints filed in late June.

Jones hadn’t even realized her health-care network was Catholic.

Mercy has about nine off-site locations in the Chicago area, including the Dearborn Station office Jones visited, said Eric Rhodes, senior vice president of administrative and professional services. It is part of Trinity Health, one of the largest Catholic health systems in the country.

The ACLU and ACLU of Michigan sued Trinity last year for its “repeated and systematic failure to provide women suffering pregnancy complications with appropriate emergency abortions as required by federal law.” The lawsuit was dismissed but the ACLU has asked for reconsideration.

In a written statement to Rewire, Mercy said, “Generally, our protocol in caring for a woman with a dislodged or troublesome IUD is to offer to remove it.”

Rhodes said Mercy was reviewing its education process on Catholic directives for physicians and residents.

“That act [of removing an IUD] in itself does not violate the directives,” Marty Folan, Mercy’s director of mission integration, told Rewire.

The number of acute care hospitals that are Catholic owned or affiliated has grown by 22 percent over the past 15 years, according to MergerWatch, with one in every six acute care hospital beds now in a Catholic owned or affiliated facility. Women in such hospitals have been turned away while miscarrying and denied tubal ligations.

“We think that people should be aware that they may face limitations on the kind of care they can receive when they go to the doctor based on religious restrictions,” said Lorie Chaiten, director of the women’s and reproductive rights project of the ACLU of Illinois, in a phone interview with Rewire. “It’s really important that the public understand that this is going on and it is going on in a widespread fashion so that people can take whatever steps they need to do to protect themselves.”

Jones left her doctor’s office, still in pain and bleeding. Her options were limited. She couldn’t afford a $1,000 trip to the emergency room, and an urgent care facility was out of the question since her Blue Cross Blue Shield of Illinois insurance policy would only cover treatment within her network—and she had just been told that her entire network followed Catholic restrictions.

Jones, on the advice of a friend, contacted the ACLU of Illinois. Attorneys there advised Jones to call her insurance company and demand they expedite her network change. After five hours of phone calls, Jones was able to see a doctor who removed her IUD, five days after her initial appointment and almost two weeks after she fell in the bathroom.

Before the IUD was removed, Jones suffered from cramps she compared to those she felt after the IUD was first placed, severe enough that she medicated herself to cope with the pain.

She experienced another feeling after being turned away: stigma.

“It felt heartbreaking,” Jones told Rewire. “It felt like they were telling me that I had done something wrong, that I had made a mistake and therefore they were not going to help me; that they stigmatized me, saying that I was doing something wrong, when I’m not doing anything wrong. I’m doing something that’s well within my legal rights.”

The ACLU of Illinois has filed two complaints in Jones’ case: one before the Illinois Department of Human Rights and another with the U.S. Department of Health and Human Services Office for Civil Rights under the anti-discrimination provision of the Affordable Care Act. Chaiten said it’s clear Jones was discriminated against because of her gender.

“We don’t know what Mercy’s policies are, but I would find it hard to believe that if there were a man who was suffering complications from a vasectomy and came to the emergency room, that they would turn him away,” Chaiten said. “This the equivalent of that, right, this is a woman who had an IUD, and because they couldn’t pretend the purpose of the IUD was something other than pregnancy prevention, they told her, ‘We can’t help you.’”

 

Tell us your story. Have religious restrictions affected your ability to access health care? Email stories@rewire.news

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